Reader Laura (the autismfromtheoutside blog) wrote in response to “Work It Out”: “What do you see in his future? Helping sorting in school cafeteria, hanging clothes as a local store, watering plants at a nursery.” She mentions these are jobs she’s seen students trained for, and they all sound pretty good to me for Alex. (Of course, I just got laid off, and they sound pretty good for me, too.)

I remember watching Alex in the isolette after his premature birth (21 ounces, 27 weeks’ G), watching him grip the breathing tube in his silent, tiny determination to some day pull it from his own throat — which he did, more than once, and sometimes before he was ready. Doing something before you’re ready has always been to me a sign of a good spirit. Alex’s, what should I call them?, internal resources have developed a lot over the past year: concentrating on homework, picking up around the house, remembering the precise location of some fun store he’s visited only once. Says Jill, “There’s not nothing going on in there.”

My problem is not what he can do, but what I’m afraid I can’t do. I watched Alex a few months ago, for instance, as he struggled to finish the tougher levels of an IQ test. He pieced together the puzzle smoothly when the solution called for using four and six pieces, for instance, but I could see his progress wind down like an old clock at the eight- and 12-piece levels. To be honest, I couldn’t have quickly done the 12-piecer, either.) Stalled, he looked away, but still he sat there. Then he looked back at the puzzle, touched a piece, looked away, sat in front of the damned puzzle with a look of defeat that probably felt as good in his throat as that air tube.
But here’s the thing: He realized he’d hit a wall, and didn’t like it. A big part of the workworld is like that, and an equally big part is moving on and up (tell me about it). Obviously he’ll do that puzzle someday. Somehow, as long as it never cuts into how much I believe in him, I think that my current fear buys him the ability to do that. It’s a cheap price to pay.
The NYC agency YAI has a new online autism community, and they let me do one of their first blogs. See it and their new community at http://www.yaiautismcommunity.org/blog/

“I can’t believe,” said Jill last night, ”that in a month the kids will go off to school in the morning, and then-”

Yes? Raunchy day-long fun like we used to have?

“-I won’t have the house to myself,” she said.

At 11:44 a.m. last Wednesday, my phone rang and my boss asked me to a conference room. In there I found him in front of a yellow legal pad scribbled with numbers, and next to him a woman I did not know.

“Jeff,” he said, ”do you know ——? From HR?” The next 20 minutes constituted a scene staged across the country, in near-record numbers, every working day. Last day at my job, and my last day still working to receive insurance benefits, is 5/22. Benefits and several and such will continue for a while. Then unemployment and COBRA — with its attendant lessened pinch from the Stimulus plan — will continue.

Alex’s autism will continue longer. I actually dread being home for months alone with Jill during the day (ha ha — sort of) more than I dread the extra time I might have to spend caring for Alex. In fact, a few extra hours during the week with the boys would be welcome before they become teenagers and hate me.

“You’re very calm about this,” my former (also recently laid off) boss said to me on the phone this morning, “and that worries me.”

Me too. I’m usually jubilant when I leave a job. Now I just have this low humming dread. Alex has no immediate medical needs; we’re even trying to get him off Topomax. Years of freelance writing and marketing books have also conditioned me to stuff envelopes against the enormous odds, but the odds these days of getting a full-time job seem beyond enormous.

Why not jubilant? The last time I hit the employment silk, in January of 1998, there was no Alex. Now there is. This crisis has at last trickled down to me, a low-paid publishing professional, and I have no doubt it’ll continue through 2009 to trickle down to the agencies that provide Alex’s services. Not to mention that it’s good to have insurance and a steady income when your child is autistic. It just quiets the hum.

A Google search for “parents,” “laid off” and “autism” turned up little, but you can check into autism meet-up groups for your city at http://autism.meetup.com/cities/us/. I bet you won’t be in a group long before you run into another member who’s been canned.

Image: bestrecessionever.com

Recent I joined a sped educators’ board over on LinkedIn recently, “Special Education Innovators.” I’m not a special educator but I like to think some of them would like to have a parent’s perspective now and then.

Discussions are half the fun of LinkedIn groups, and when things are slow I like to pose a question. So I posted: “What’s the best and worst thing for educators when it comes to dealing with parents of kids with special needs?”

Image: usgarchives.net

I got two responses, both insightful.

“The Best?” replied one group member, “Concerned parents who are honest with themselves about their child’s needs. They are generally better informed, and maintain a healthy collaboration with educators and related service providers. The Worst: An aggressive, uninformed parent who comes to school once a year to make unreasonable demands for academic results. They rarely even check their child’s bookbag for teacher communication. Parents who work two jobs, group home guardians, and unconcerned parents rarely make any contact with professionals.”

(Two jobs? Will this economy spare no aspect of our lives, not even parent-teacher conferences?)

“The best thing you can do is stay informed and involved in your child’s education and have realistic goals and dreams for him or her,” replied another member. “Also, make sure your expectations for the teacher and school staff are reasonable, as well. Most teachers I know welcome open communication between home and school and an informed, supportive parent is wonderful. The problems come when the parent becomes so focused on his or her child that he or she forgets the teacher has other students for whom she’s responsible, as well as other school-related activities, and begins to put unreasonable demands on the teacher’s time and attention.”

We’ve tried to adhere to these rules with Alex and his teachers. We send at least as many notes back to school as we receive, and have often been the ones initiating exchanges. We slate our parent/teacher conferences outside the set and regimented days and hours, as long as his teacher agrees, because we figure it gives the teacher more time to talk to us and more brain space to think about Alex. Jill also teaches knitting every Friday morning in Alex’s class, so gets a chance to see how he’s doing real and close up.

The Alex we’ve seen in the classroom - velcroing the right date to the wall calendar, leading the “Pledge of Allegiance,” taking classmates by the hand - is often heads above the Alex we see at home, where every afternoon off the bus he just wants to shed his khakis and munch a few pretzels on the way into evening. The Alex we see in the classroom, I like to think, is more like the grown-up Alex we’ll someday launch into the world. Seeing him this way is well worth shuffling the schedules and making time to stay informed. Hope it stays that way after one of us has to get a second job.

Lack of sleep makes everything difficult. Scratch that. Lack of sleep makes everything impossible. It’s 2 in the afternoon, the living room is mostly still a mess. (I did manage to pick up some papers and put the boys’ books, lying on the floor, in one stack on the coffee table.) Usually by this time I have a clear plan  for dinner. At least I know what I’m going to make. But today I don’t have a clue.

Should have bought some semi-prepared thing at Trader Joe’s this morning, where I was picking up Hebrew National hot dogs for Alex (only $3.99, as opposed to $5.19 and up everywhere else) but nothing seemed that appealing. Ned will be home in 90 minutes, and in two and half hours Alex will be too. Then things will get busy, so I really need to get my ass in gear.

The problem: last night at around 2:30, Alex woke up. I heard his footsteps scurrying toward us. I heard him laughing. “Alex, go back to bed!” I called, using the Firm Tone of Voice. More laughing. Sighing, I had to get up and get him settled. Jeff does this quite often, but he was getting up at 6 a.m. to put Alex on the school bus.

Our middle-of-the-night routine (and I wish we didn’t have one, didn’t HAVE to have one) is that one of us takes Alex back to bed. Gives him a premixed dose of melatonin. Says firmly, Head down! And heads back to own bed in hopes (very optimistic, in my case) of more sleep.

I don’t work outside the home, these days. Recently, there’s been some freelance work, luckily, but I don’t have to be anywhere. And given Alex’s schedule, I don’t see how I can. For a few years, he had an afterschool program that returned him home by bus at around 6:00, but that was only three days a week. This year, no after-school. He’s home at 4:30 every day. If there’s a job that would get me home in time to meet Alex’s bus (after meeting Ned’s bus at 3:30), I’d take it.

A lot of the mothers I know don’t work for pay outside the home. “It’s just not possible, given Sasha’s therapy schedule,” said one. “During the day is when I catch up on sleep if I have to,” said another. (OK, that was me. I’d definitely miss making up for lost sleep if I had a full-time job.)

A couple of years ago I got a jury duty summons, and some parent told me with utter confidence I’d definitely have to serve. “What about when my kids get home from school?” I asked her. “Oh, they just set it up so you leave at 2:30 or 3:00,” she said, and for some reason I believed her. But I had to go down to court anyway, so I went and told all this to the jury officer (”I’m certainly willing to serve,” I told him, “but who’s going to take care of my kids after school? Should I leave early?”) and he looked at me like I was nuts and told me if I was sole caretaker of school-age children, I didn’t have to serve.

It is a Sunday (though I’ve kind of lost track of time, being away from home in California) and Jim and I are off from work, and Charlie from school. So we’re not having our usual rush and worry to get home in time to meet the schoolbus (though Charlie seeming to have more away from home holiday anxiety than ever before has meant there’s been plenty to keep us occupied). As Kajuana Ezell, whose 17-year-old son is autistic and who works as a senior administrative assistant for Prudential Financial, Inc., in Hartford, says about being the working mother of a special needs child:

“We want a career just like everyone……It’s just that our 100 percent may not be the standard 8 to 5. Companies that can’t give the flexibility, or allow us career opportunities, companies that aren’t open to change, we can’t work there.”

Today’s Boston Globe notes that some companies—-who’ve started to cover more services and therapies for those with disabilities—have been offering financial planning and parenting forums (via websites and conference calls, as well as live seminars) about special needs children.

Lost talent is one risk for inflexible companies. In nearly a quarter of families caring for children with special needs, one or both parents wind up reducing their work hours or quitting their jobs, according to government surveys.

One challenge employers face in responding is the spectrum of different conditions in the special needs community, from fragile health to behavioral disorders. As is often the case in the work-life arena, one size does not fit all. That’s why assessing employee needs regularly, and tailoring supports accordingly, is crucial.

I have to second Ezell’s point that about working 100 percent, just not in that “standard 8 to 5.” Parents of special needs kids talk about having to be “on” 24/7, and that can mean that we know how to be really flexible about getting things done, 24/7, too.

Yesterday I wrote about 16-year-old Collin Driscoll’s Hire the Brain business—–in Maryland, 22-year-old Andrew Pegg of Frostburg owns Andilla Designs & Graphics, which personalizes gifts and adversing products. As noted in today’s Cumberland Times-News, Pegg, who is autistic, “has not spoken a single word since he was 2 years old.” He was recently awarded the Personal Achievement Award from the Maryland Division of Rehabilitation Services and the Maryland Rehabilitation Association. Pegg receives assistance from his family, counselor, and Derrick Swandol, a job coach from Spectrum, a local non-profit agency.

I know it’s a long road ahead to figuring out a job for Charlie and supporting him in it. Hearing about Hire the Brain and Andilla Designs & Graphics reminds me that, there’s more possibilities out there than might be thought.

A 16-year-old starts his own computer consulting and repair business, Hire the Brain—impressive. Today’s Columbia Tribune tells how Collin Driscoll, who has Asperger Syndrome, started his company with his father and, too, how he’s learned to deal with his sound sensitivity.

Several months ago, [Driscoll's] mother convinced him to take a trip by himself to his aunt’s home in Kansas and to help her trucking company fix its computer system. It was a big step for Collin, but he enjoyed it, and at his aunt’s encouragement decided he wanted to start the business with his father, Steve, an IT programmer who formerly worked for large companies but was forced into semi-retirement after suffering a stroke.

“I’ve gone from being the geek to being his driver,” joked Steve Driscoll, who marvels at his son’s ability with computers.

Go here to the webpage of Hire the Brain, which notes “Why pay for the whole squad when all you need is one good brain?”—why, indeed?

The Florida legislature has declared the first half of October as Disability History and Awareness Weeks, today’s West Volusia Beacon notes. Indeed, the legislature is said to be “trying to change the negative image, perception and treatment of people with disabilities.” The article highlights programs for disabled students throughout the county, such as Deltona High School’s Multi-VE program.

VE stands for varying exceptionalities. Multi-VE students’ disabilities and challenges include hearing or language impairments, mental handicaps, emotional and behavioral disorders, multiple physical handicaps and disorders all across the autism spectrum.

Located in Building Z on the 92-acre campus, Deltona High School’s Multi-VE program serves more than 50 students, ages 14 through 21. They attend classes to learn to function independently and to acquire skills to help them gain employment after graduation.

At Deltona High School, “VE” really means “victories everywhere,” because students with disabilities are showing they can be successful in and out of the classroom — that they have abilities!

The classrooms and programs recall those in my son’s school district here in New Jersey—-but we could all use more of the “VE” attitude, wherever we are.

It’s said to be something that parents of children with developmental disabilities experience. An article by Amy Basking and Heather Fawcett coins the terms “Empty Nest Envy,” as noted in today’s Orangeville Banner:

While most parents can look forward to children spreading their own wings, there are some who look to the future with trepidation and uncertainty. Not just for themselves, but more importantly for their adult children who have developmental disabilities. These parents, when their children graduate from high school, suddenly find themselves supporting their adult child full-time.

The reality for these parents can be daunting. In the article, the authors talk about how for one family their 28-year-old son remains with them. Despite thinking that he would be living on his own with supports at this age, the reality is that he will probably remain with them “until one of us dies or we’re in crisis.” This couple has little time alone and never the opportunity to holiday away together.

Another mom, who is 60 with a 30-year-old son with autism, is quoted as saying, “When the kids graduate there is nothing but endless applications for funding. I can’t afford to retire. I have no savings. I’ll retire when I drop dead.”

The just-this-week published Easter Seals Living with Autism study reports that more than 80 percent of adults with autism between the ages of 19 and 30 are still living at home and I do wonder what wil happen for Charlie. Sure I think a lot about, advocate for, how to provide more housing for disabled adults, more jobs, more and more and more: But how to turn needs, advocacy, testimony, research, into realities? Into an actual place for Charlie to live when he’s older, with the supports that he’ll need?

Let’s say, I don’t want to have develop empty next envy. But it may well be inevitable.